Parents of kids with developmental delays often say that watching their children work so hard to accomplish milestones can often make the reward that much sweeter when they do. When I read that over and over before Claire was born those words didn't make sense to me, exactly. It sounds like what you say when you are trying to find the silver lining in a dark cloud of a situation.
And now I know what they mean. Every next step comes with practice, and stretches, and exercises and paying attention to positional support. And every day she works hard at it all and shows such determination and focus and she does the next thing. She gets her hands together and grabs things and brings them to her mouth and holds her head up high. She looks so pleased with herself, so proud of herself. My heart soars every time I see that look.
In my life, some things have come so easily. But it is the things that I have found difficult and accomplished anyway that have helped to define me the most. It is the struggles that I have stuck out and overcome that have built a strength of character that serves me well in this new adventure of motherhood.
I hope that this journey and the way that Claire works hard to meet every next milestone will serve her as well, I hope one achievement will lead to the next, that she will continue to grow and learn and face the world with the kind of determination and focus that has gotten her this far. And I hope she will always feel pride in herself.
There will be things that come easily to her, too. She has an optimism and a sense of calm that make it natural for her to relate to other people. She is curious and joyful and loving. Not everything in her life is difficult and she has gifts and talents we haven't even discovered yet.
Claire has been talking more and making new sounds.Goo! Gaa! Blaaargh! She has a lot to say. We've been working on tummy time and pushing up with her arms, Not there yet, but she is tolerating it for longer these days. We have been working to get her as far as we can before surgery so she doesn't lose too much during recovery.
Surgery is on Wednesday next. I am taking leave from work and Brenden is taking some time off before his winter break. We have to pack for a few weeks, not knowing what life will be like, exactly, during recovery. We have to stay calm and get organized and breathe deep and hope for the best outcome we can.
Brenden and I have had a tough go of it these past three years and this feels like a culmination somehow. If we can just get through this one more thing and survive...I know it's not the end but maybe it will be a turning of the page. A new chapter awaits?
We have been looking at Claire's heart for so long - three echocardiograms in utero, one 12 hours after she was born, three more in the short 5 months she's been alive. I have seen it from every angle and it feels like I could pick her heart out of a lineup if I had to. It looks like some kind of alien monster pulsating on the screen. If you could see her heart you would understand how unbelievable it is that she is thriving and growing so well. You would be amazed by how strong she is getting and how much she is progressing. Sometimes it seems like she is running on determination alone.
Claire's surgery has been scheduled for mid-December.
I feel like I'm having a constant panic attack but in slow motion.
We have so many pictures from ultrasounds, dozens of pictures of Claire trying not to
her picture taken. There are blurry ones, and ones with her arms in front of her face and some of her feet the time they just couldn't get anything at all. Maybe we should have asked for pictures of her heart so she could see them when she is older.
I was sitting here on my HR website trying to figure out how much vacation I can spend while we have to be away for the surgery and if I have to take FMLA leave so I don't lose my medical benefits and if I can work extra hours to make some extra cash before Brenden and I take almost a month off of jobs that don't pay us when we're not there. But then, maybe i can't take leave because I already took 12 weeks when she was born and I don't know how we'll have time to pack and prep if I'm working all the time until then and oh my goodness my heart is pounding fast.
Today Claire ate carrots for the first time and it seems like that is something worth focusing on.
During physical therapy we worked on support and positioning to help her along in her sitting up endeavors and did the paperwork to add occupational therapy to her schedule and did some stretching with her hips.
It was exhausting.
Claire was a superstar.
And I will keep reminding myself to breathe.
This week Claire decided that she wants to sit up. She started by just kind of lurching forward when she was laying in her lounger. Then the other day she was sitting on me, reclining back on my legs and she pulled herself up. She needs help and once she is sitting she needs support to stay balanced, but it is amazing progress. And the fact that she just started doing it on her own is great, so many times with therapy we're trying to introduce her to positions and have to work to engage her enough so she'll be willing to tolerate it. But she is so happy when she gets to sit up, she looks so pleased with herself.
She is also not sleeping as much during our walks. She pulls her head up and tries to look around and suck her thumb. It'll be nice when she is stable enough to face forward, she'll be able to see the world. I am so excited that I get to show it to her.
We heard from CHOP and we scheduled her surgery. I'll write more about that another day, it feels too terrifying to think about more than I already have to. For today I just want to think about how far she has come, how big she has grown, and what an amazing feeling it is when she sees me coming and she smiles.
Part of a poem keeps running through my head. I thought that it was a line from an Audre Lorde piece but a quick bit of research says she was quoting a Pat Parker poem -
The first thing you do is to forget that I'm black
Second, you must never forget that I'm black
I first read that line in a college class and it has always resonated with me. It is about wanting to be seen as an individual but also to be understood in our context. I think about that when it comes to being Claire's mom. I want everyone to forget her diagnoses so neither she nor I are ever limited by the expectations they might provoke. But I also want them to always remember her diagnoses as the framework from within which I am mothering.
On one level everything I do would look familiar to anybody who has had an infant. I try to give her everything she needs, to help her development, to cuddle and snuggle her, and to make sure she feels loved. And I want to feel that kinship with other parents, that shared sense of how rewarding and difficult this all is.
But there is another level. She has more appointments than a typical kid, therapy, cardiologist, extra weight checks at the pediatrician. And it is more important to pay attention to positioning because of her low muscle tone. Because everything is a little harder, she'll find a position that compensates and makes it easier but that doesn't help her get stronger and we have to help her by making her work for it. She gets tired easier than other babies because tummy time and the other exercises we do with her are pretty exhausting. And sleep is especially important, when she isn't well rested she has trouble with coordination and that can get in the way of feeding. We do a lot of research and check in with our doctors and therapists before we buy her equipment or chairs or start anything new. We want to make sure that everything we do supports her development if possible.
Sometimes there are sacrifices. Seats and swings that would be convenient places for her to hang out safely on her own don't give her enough support and we've decided to not use them until she is stronger and able to support herself better. I am lonely and isolated but we are dedicated to keeping Claire as healthy as possible before her surgery and so we haven't taken her very many places or had too many visitors.
I want to be seen on that level, too. Because it is such a big part of my life now, such a big part of who I am as a mother.
Claire is a joyful baby, so calm and happy most of the time. She tries hard at everything she does and she is a silly girl who wears books as a hat..
I don't know what this journey is, yet. But I know we're on it together and for now, that'll have to be enough.
Parents of kids with developmental delays often say that watching their children work so hard to accomplish milestones can often make the reward that much sweeter when they do. When I read that over and over before Claire was born those words didn't make sense to me, exactly. It sounds like what you say when you are trying to find the silver lining in a dark cloud of a situation. 
In my life, some things have come so easily. But it is the things that I have found difficult and accomplished anyway that have helped to define me the most. It is the struggles that I have stuck out and overcome that have built a strength of character that serves me well in this new adventure of motherhood. 
